WWW.CANCERCARE.ORG
CANCERCARE CONNECT® BOOKLET SERIES
Myelodysplastic Syndromes (MDS)
TREATMENT UPDATE:
CancerCare®
National Office
275 Seventh Avenue
New York, NY 10001
Toll-free 800-813-HOPE (4673)
Fax 212-712-8495
Email [email protected]
Web www.cancercare.org
The content of this booklet is independent, non-promotional and free of commercial influence and bias.
The CancerCare Connect® Booklet Series offers up-to-date, easy-to-read
information on the latest treatments, managing side effects and coping
with cancer.
Founded in 1944, CancerCare® is the leading national organization providing
free, professional support services and information to help people manage
the emotional, practical and financial challenges of cancer. Our comprehensive
services include case management, counseling and support groups over the
phone, online and in person, educational workshops, publications and financial and
co-payment assistance. All CancerCare services are provided by master’s-prepared
oncology social workers.
CancerCare relies on the generosity of supporters to provide our services
completely free of charge to anyone facing a cancer diagnosis. If you have
found this resource helpful and wish to donate, please do so online at
www.cancercare.org/donate. You may also mail a check, payable to
CancerCare, to CancerCare, Attn: Donations, 275 Seventh Avenue,
New York, NY 10001.
Thank you.
1CANCERCARE | TREATMENT UPDATE: MYELODYSPLASTIC SYNDROMES (MDS)
Treatment Update: Myelodysplastic Syndromes
(MDS)
Introduction .................................................................................2
Symptoms........................................................................................2
Diagnosis..........................................................................................3
Treatment Options.....................................................................4
Treatment Side Effects............................................................8
Communicating With Your Health Care Team ................14 CancerCare’s Free Support Services and Programs.....16 Frequently Asked Questions.................................................18
Resources ......................................................................................21
TABLE OF CONTENTS
EDITOR
Rami Komrokji, MDSenior Member & Professor of Oncologic Sciences Section Head-Leukemia and MDS;Vice Chair-Malignant Hematology Department Moffitt Cancer Center
© 2021 CancerCare®. All rights reserved. 3/21
All people depicted in the photographs in this booklet are models, used for illustrative purposes only.
2 WWW.CANCERCARE.ORG
Myelodysplastic Syndromes (MDS) are a group of disorders in which the bone marrow does not produce enough healthy blood cells. Most people diagnosed with MDS are over the age of 65, but MDS can also occur in younger patients. Bone marrow is the spongy tissue inside bones where blood cells
are made. Blood cells include white blood cells that fight infection,
red blood cells that carry oxygen and platelets that help with
blood clotting.
Symptoms Most early-stage cases of MDS do not cause signs or symptoms.
Over time, symptoms may include:
• Fatigue
• Shortness of breath
• Pinpoint-sized red spots just beneath the skin
• Pallor (paleness) caused by a low red blood cell count (anemia)
• Frequent infections caused by a low white blood cell count
(leukopenia)
• Unusual bruising or bleeding caused by a low blood platelet
count (thrombocytopenia)
3CANCERCARE | TREATMENT UPDATE: MYELODYSPLASTIC SYNDROMES (MDS)
Diagnosis
If MDS is suspected, doctors will take a medical history and
perform a physical examination. Blood tests will be conducted
to determine the levels of red blood cells, white blood cells and
platelets and to look for irregularities in their size, shape and
appearance.
A bone marrow biopsy is typically performed during the diagnosis
process. A small piece of bone, along with the marrow inside the
bone, is removed and tested for abnormalities. Additionally, a
small amount of liquid bone marrow is withdrawn using a thin
needle and then examined.
Genetic testing (also called molecular testing) may also be
conducted, examining for chromosome abnormalities and gene
mutations occurring in MDS cells.
These tests can help identify the subtype of MDS and the risk of
progression, which are factors in determining the best treatment
approach.
4 WWW.CANCERCARE.ORG
Treatment OptionsPeople with MDS who are not exhibiting symptoms or whose
blood counts are not very low often don’t receive treatment.
Instead, their condition is monitored by their health care team
through blood tests and physical exam, as well as a review of any
symptoms that may be related to MDS. This monitoring is often
referred to as “active surveillance.”
If treatment is recommended, you and your doctor will discuss
the approach that is right for you, based on your individual
circumstances. A combination of treatments may be used to bring
blood counts back to healthy levels.
5CANCERCARE | TREATMENT UPDATE: MYELODYSPLASTIC SYNDROMES (MDS)
Medications • Growth-stimulating factors are medications that increase
the number of blood cells the body makes. Epoetin alfa
(Epogen, Procrit) and darbepoetin alfa (Aranesp) are
erythropoiesis-stimulating agents, a type of growth-stimulating
factor that reduces the need for blood transfusions by
increasing red blood cells. Filgrastim (Neupogen, Zarxio)
increases white blood cells in people with certain types of
MDS, helping to prevent infections.
• Immunomodulatory drugs are a type of immunotherapy
used to treat certain types of cancer. The immunomodulatory
drug lenalidomide (Revlimid) reduces the need for blood
transfusions for people with MDS that is associated with
the genetic abnormality del(5q).
• Hypomethylating agents are types of chemotherapy that
affect certain genes within cells. Azacitidine (Vidaza) and
decitabine (Dacogen) are hypomethylating agents used for
the treatment of MDS, most often for people whose MDS
has a higher International Prognostic Scoring System
(IPSS-R) score. IPSS-R is a tool that assesses the risk
of the MDS progressing.
• Conventional chemotherapy is the use of drugs to destroy
cancer cells by stopping the ability of the cells to grow and
divide. In July 2020, the U.S. Food and Drug Administration
(FDA) approved Inqovi (the combination of decitabine and
cedazuridine) for treatment of people with MDS. Other
conventional chemotherapy drugs used to treat MDS are
cytarabine (Cytosar-U), daunorubicin (Cerubidine) and
idarubicin (Idamycin).
• Erythroid maturation agents work by increasing the number
and quality of red blood cells. In April 2020, the FDA approved
luspatercept-aamt (Reblozyl) for the treatment of anemia in
certain sub-groups of people with low- to intermediate risk MDS.
6 WWW.CANCERCARE.ORG
Blood Transfusions Blood transfusions may be given to increase the levels of red blood
cells or platelets. Transfusions may also be given if medications are
being taken that have temporarily reduced the level of red blood
cells or platelets.
A transfusion is typically a safe procedure. However, repeated
transfusions of red blood cells can cause high iron levels in the
body, which can damage the liver, heart or pancreas. Medications
called chelating agents (taken in pill form) can help rid the body
of excess iron through urine or stool.
7CANCERCARE | TREATMENT UPDATE: MYELODYSPLASTIC SYNDROMES (MDS)
The Importance of Clinical Trials
Clinical trials are the standard by which we measure the worth
of new treatments and the quality of life of individuals as
they receive those treatments. For this reason, doctors and
researchers urge people with cancer to take part in
clinical trials.
Your doctor can guide you in making a decision about whether
a clinical trial is right for you. Here are a few things that you
should know:
• Often, people who take part in clinical trials gain access to
and benefit from new treatments.
• Before you participate in a clinical trial, you will be fully
informed as to the risks and benefits of the trial, including
any possible side effects.
• Most clinical trials are designed to test a new treatment
against a standard treatment to find out whether the new
treatment has any added benefit.
• You can stop taking part in a clinical trial at any time for
any reason.
8 WWW.CANCERCARE.ORG
Treatment Side Effects All cancer treatments can cause side effects. It’s important that
you report any side effects that you experience to your health
care team so they can help you manage them. Report them right
away—don’t wait for your next appointment. Doing so will improve
your quality of life and allow you to stick with your treatment plan.
It’s important to remember that not all patients experience all side
effects, and patients may experience side effects not listed here.
Some side effects may occur across treatment approaches. This
section provides tips and guidance on how to manage these side
effects should they occur.
Managing Digestive Tract Symptoms
Nausea and vomiting
• Avoid food with strong odors, as well as overly sweet, greasy,
fried or highly seasoned food.
• Eat meals that are chilled, which often makes food more
easily tolerated.
• Nibble on dry crackers or toast. These bland foods are easy on
the stomach.
• Having something in your stomach when you take medication
may help ease nausea.
9CANCERCARE | TREATMENT UPDATE: MYELODYSPLASTIC SYNDROMES (MDS)
10 WWW.CANCERCARE.ORG
Constipation
• As hydration is important to avoid constipation, make sure
to drink plenty of fluids. Also, limit your intake of caffeine
and alcoholic beverages, as they can cause dehydration.
• Include foods high in fiber in your daily diet, such as fruit
(especially pears and prunes), vegetables and cereals. If your
health care team approves, you may want to add synthetic
fiber to your diet, such as Metamucil, Citrucel or FiberCon.
• Be as physically active as you can, after checking with your
health care team on the level of physical activity that is right
for you.
• If your doctor has prescribed a “bowel regimen,” make sure to
follow it exactly.
11CANCERCARE | TREATMENT UPDATE: MYELODYSPLASTIC SYNDROMES (MDS)
Diarrhea
• Drink plenty of water. Ask your doctor about using drinks such
as Gatorade which provide electrolytes. Electrolytes are body
salts that must stay in balance for cells to work properly.
• Over-the-counter medicines such as loperamide (Imodium A-D
and others) and prescription drugs are available for diarrhea
but should be used only if necessary. If the diarrhea is bad
enough that you need medicine, discuss it with your doctor
or nurse.
• Choose fiber-dense foods such as whole grains, fruits and
vegetables, all of which help form stools.
• Avoid food high in refined sugar and those sweetened with
sugar alcohols such as sorbitol and mannitol.
Managing Loss of Appetite
• Eating small meals throughout the day is an easy way to take
in more protein and calories, which will help maintain your
weight. Try to include protein in every meal.
• To keep from feeling full early, avoid liquids with meals or take
only small sips (unless you need liquids to help swallow). Drink
most of your liquids between meals.
• Keep high-calorie, high-protein snacks on hand such as
hard-boiled eggs, peanut butter, cheese, ice cream, granola
bars, liquid nutritional supplements, puddings, nuts, canned
tuna or trail mix.
• If you are struggling to maintain your appetite, talk to your
health care team about whether appetite-building medication
could be right for you.
12 WWW.CANCERCARE.ORG
Managing Fatigue
Fatigue (extreme tiredness not helped by sleep) is one of the most
common side effects of many cancer treatments. Here are a few
tips that may help reduce fatigue:
• Take several short naps or breaks during the day.
• Take short walks or do some light exercise, if possible.
• Try easier or shorter versions of the activities you enjoy.
• Ask your family or friends to help you with tasks you find
difficult or tiring.
• Save your energy for things you find most important.
There are also prescription medications that may help. Your health
care team can provide guidance on whether medication is the right
approach for your individual circumstances.
Fatigue can be a symptom of other illnesses, such as anemia,
diabetes, thyroid problems, heart disease, rheumatoid arthritis or
depression. Be sure to ask your doctor if they think any of these
conditions may be contributing to your fatigue.
It can also be beneficial to speak with an oncology social worker or
oncology nurse to help manage your fatigue. These professionals
can work with you to manage any emotional or practical concerns
that may be causing symptoms and help you find ways to cope.
13CANCERCARE | TREATMENT UPDATE: MYELODYSPLASTIC SYNDROMES (MDS)
Managing Flu-Like Symptoms
The fever and aches that may occur with treatment can be managed
with a combination of rest and medication. Aetaminophen (such as
Tylenol) is often a doctor’s first choice to treat these symptoms.
Nonsteroidal anti-inflammatory drugs (NSAIDs) can also help, but
should be taken only if recommended by your doctor, as they can
cause other side effects. NSAIDs include aspirin, ibuprofen (Motrin
and others) and naproxen (Naprelan, Midol, Aleve and others).
Report a fever to your doctor immediately, as it could be sign of
infection and require emergency treatment.
14 WWW.CANCERCARE.ORG
Communicating With Your Health Care TeamAs you manage your MDS, it’s important to remember that you
are a consumer of health care. The best way to make decisions
about health care is to educate yourself about your diagnosis and
the members of your health care team, including doctors, nurses,
nurse practitioners, physician assistants, dietitians, social workers
and patient navigators.
Here are some tips for improving communication with your health
care team:
Start a health care journal. Having a health care journal or
notebook (either on paper or in a digital format) will allow you to
keep all of your health information in one place. You may want to
write down the names and contact information of the members
of your health care team, as well as any questions for your doctor.
Keep a diary of your daily experiences with cancer and treatment.
You can separate your journal or notebook into different sections
to help keep it organized.
Prepare a list of questions. Before your next medical appointment,
write down your questions and concerns. Because your doctor
may have limited time, you should ask your most important
questions first, and be as specific as possible.
15CANCERCARE | TREATMENT UPDATE: MYELODYSPLASTIC SYNDROMES (MDS)
Bring someone with you to your appointments. Even if you have
a journal and a prepared list of questions or concerns, it’s always
helpful to have support when you go to your appointments. The
person who accompanies you can serve as a second set of ears.
They may also think of questions to ask your doctor or remember
details about your symptoms or treatment that you may
have forgotten.
Write down your doctor’s answers. Taking notes will help you
remember your doctor’s responses, advice and instructions. If you
cannot write down the answers, ask the person who accompanies
you to do that for you. If you have a mobile device, like a tablet or
smartphone, ask if you can use it to take notes. Writing notes will
help you review the information later.
Record your visit if your doctor allows it. Recording the
conversation with your doctor gives you a chance to hear specific
information again or share it with family members or friends.
16 WWW.CANCERCARE.ORG
CancerCare’s Free Support Services and Programs It can be very difficult to receive a diagnosis of MDS, and adjusting
to the necessary changes in your life can be challenging.
CancerCare® can help. We are a national nonprofit organization
providing free, professional services to anyone affected by cancer.
Our licensed oncology social workers can provide support and
education, help in navigating the complicated health care system,
and offer information on support groups and other resources.
To learn more about how CancerCare can help, call us at
800-813-HOPE (4673) or visit www.cancercare.org.
You will likely also build your own personal support network
composed of family and friends. In doing so, it’s best to take some
time to think about the people in your life and how they are best
suited to help. Match the task to their strengths—ask a family
member who loves to shop to pick up something for you at the
store; ask a friend who’s a good listener to come over for a chat.
17CANCERCARE | TREATMENT UPDATE: MYELODYSPLASTIC SYNDROMES (MDS)
18 WWW.CANCERCARE.ORG
MORE ABOUT MYELODYSPLASTIC SYNDROMES (MDS)
Frequently Asked QuestionsQ: Is a bone marrow transplant a treatment option for MDS?
A: A bone marrow transplant is a procedure in which diseased
bone marrow is replaced with healthy bone marrow.
In the procedure, stem cells are harvested (collected) from the
patient or from a donor and then stored. The patient is given high
doses of chemotherapy to destroy as many unhealthy cells as
possible. The stem cells are then “infused” (transplanted) into
the body, where they travel to the bones and begin rebuilding
bone marrow.
When a person with MDS receives their own stem cells, the
procedure is called an “autologous” stem cell transplant. The
procedure is known as an “allogeneic” stem cell transplant if the
stem cells are from a donor (either a close relative, such as a
brother or sister, or a donor from a registry).
While bone marrow transplant may be an option for some people
with MDS, it is a complex procedure with significant risks. It is
typically only considered as a treatment option for higher risk
MDS and for patients in relatively good health.
Immunosuppressive therapy may be used to lower the risk of the
bone marrow transplant being rejected by the body. This regimen
consists of a combination of anti-thymocyte globulin (ATG)
and cyclosporine.
19CANCERCARE | TREATMENT UPDATE: MYELODYSPLASTIC SYNDROMES (MDS)
Q: What other health care professionals should I incorporate
into my care team?
A: Your medical oncologist is an essential member of your health
care team, but there are other health care professionals who can
help you manage your diagnosis and treatment:
• Your primary care physician should be kept updated about
your MDS treatment and any test results.
• Your local pharmacist is a great source of knowledge about
the medications you are taking. Have all of your prescriptions
filled at the same pharmacy to avoid the possibility of harmful
drug interactions.
• Make sure your oncologist knows of any other medical
conditions you have, or any pain you are experiencing, so
that they can consult with your primary care physician or
your specialist if needed.
• Ask your oncologist to send a summary of your visits to your
primary care physician and all doctors involved in your care.
Remember, there is no such thing as over-communication.
20 WWW.CANCERCARE.ORG
Q: What is a treatment summary and why is important?
A: Keeping your own records up-to-date in the form of a treatment
summary can be helpful, as it allows you and your family members
to have instant access to the specifics of your MDS diagnosis and
treatment. A treatment summary should include:
• Your name and date of birth
• Date of diagnosis
• Prescribed therapy/therapies, including dates started and
stopped and dosages when appropriate
• Dates and types of baseline and post-diagnosis testing and
the results of these tests
• Other medications and supplements you are taking
• Blood transfusion dates and results
• Names, affiliations and contact information of all members
of your health care team
Ask the members of your health care team what they suggest be
included. Take your personal record with you when you visit any
doctor, not just your oncologist.
21CANCERCARE | TREATMENT UPDATE: MYELODYSPLASTIC SYNDROMES (MDS)
Resources
CancerCare®
800-813-HOPE (800-813-4673)www.cancercare.org
American Cancer Society800-227-2345www.cancer.org
Cancer.NetPatient information from the American Society of Clinical Oncology 888-651-3038www.cancer.net
The Leukemia & Lymphoma Society (LLS)888-557-7177www.lls.org
MDS Foundation 800-637-0839www.mds-foundation.org
Medicine Assistance Tool www.medicineassistancetool.org
CLINICAL TRIALS WEBSITES
EmergingMedwww.emergingmed.com
National Cancer Institutewww.cancer.gov
This booklet is supported Taiho Oncology, Inc.
22CANCERCARE CONNECT | CARING FOR YOUR BONES WHEN YOU HAVE CANCER
WWW.CANCERCARE.ORG800-813-HOPE (4673)
Top Related